Defining patient's experiential knowledge: Who, what and how patients know. A narrative critical review.

Experiential knowledge is today increasingly valued in health-care practices, public health policies and health research and education programs. However, despite popular and institutional success, the concept remains loosely defined with the result of weakening its heuristic scope and paving the way for its commodification. In this article, we seek to provide a finer characterisation of patients' experiential knowledge's features and specificities through a critical narrative review of humanities and social science (HSS) literature published in English and French (1976-2021). Inspired by Jovchelovitch's analysis of social knowledge, we seek to highlight the diversity and plurality of forms and articulations of knowledge that characterise experiential knowledge, as well as the gradual, dynamic and entangled process that leads from experience to knowledge and expertise. Our analysis points to the need for future research to adopt a resolutely pragmatic and situated orientation in the study of experiential knowledge and the new figures of the contemporary patient that they help to create.

Improving the informed consent process among HIV-infected undisclosed minors participating in a biomedical research: insights from the multicentre nutritional SNACS study in Senegal.

OBJECTIVES: Providing research information in a manner accessible to minors participating in biomedical research is a major challenge. Guidance is dramatically lacking regarding best practices for seeking informed consent among undisclosed minors enrolled in HIV-related research. We implemented an improved informed consent process (IICP) and identified factors associated with understanding of the information presented to HIV-infected minors prior to their enrolment in a study. METHODS: We enrolled study participants attending 12 paediatric HIV clinics in Senegal. Children ≥7 years were provided with standardised research information using the IICP, which involves viewing a video and taking part in extended group discussions. Understanding was assessed by seven basic questions scored 1 or 2 points, with a maximum score of 11 points. A score of 9 or more points was defined as satisfactory understanding. Factors associated with understanding were identified using a stepwise logistic regression model. RESULTS: Overall, 112 children, with a median age of 12.9 years (IQR: 10.2-15.0), participated in the IICP, of whom 37% were HIV disclosed. 71% achieved a satisfactory understanding score and all gave consent to participate in the research. HIV-disclosed children were more likely to demonstrate satisfactory understanding than undisclosed children (aOR = 3.2, 95% CI: 1.1-9.6). Age, study setting and education level were not associated with satisfactory understanding. CONCLUSION: These findings provide practical guidance for the development of improved and friendly informed consent processes in research involving minors. The implementation of the paediatric HIV research agenda will require a standardised and operational definition of informed consent, integrating the issue of HIV disclosure.

OBJECTIFS: Fournir des informations sur la recherche d'une manière accessible aux mineurs participant à la recherche biomédicale est un défi majeur. Les guidances font cruellement défaut en ce qui concerne les meilleures pratiques pour obtenir le consentement éclairé des mineurs non dévoilés, inscrits dans des recherches sur le VIH. Nous avons mis en place un processus de consentement éclairé amélioré (PCEA) et identifié les facteurs associés à la compréhension des informations présentées aux mineurs infectés par le VIH avant leur inscription à une étude. MÉTHODES: Nous avons recruté des participants à l'étude dans 12 cliniques pédiatriques de traitement du VIH au Sénégal. Les enfants de 7 ans et plus ont reçu des informations de recherche standardisées à l'aide du PCEA, qui consiste à visionner une vidéo et à participer à des discussions de groupe prolongées. La compréhension a été évaluée par 7 questions de base notées 1 ou 2 points, avec un score maximum de 11 points. Un score de 9 points ou plus a été défini comme une compréhension satisfaisante. Les facteurs associés à la compréhension ont été identifiés à l'aide d'un modèle de régression logistique par étapes. RÉSULTATS: Au total, 112 enfants âgés de 12,9 ans en moyenne (IQR: 10,2-15,0) ont participé au PCEA, dont 37% avaient leur statut VIH dévoilé. 71% ont obtenu un score de compréhension satisfaisant et tous ont consenti à participer à la recherche. Les enfants avec un statut VIH dévoilé étaient plus susceptibles de démontrer une compréhension satisfaisante que ceux avec un statut non dévoilé (aOR: 3,2; IC95%: 1,1-9,6). L'âge, le cadre de l'étude et le niveau d'éducation n'étaient pas associés à une compréhension satisfaisante. CONCLUSION: Ces résultats fournissent des guidances pratiques pour la mise au point de processus de consentement éclairé améliorés et conviviaux dans la recherche impliquant des mineurs. La mise en œuvre du programme de recherche pédiatrique sur le VIH nécessitera une définition normalisée et opérationnelle du consentement éclairé, intégrant la question de la révélation du VIH.

Barriers to Linkage to Care for Hepatitis B Virus Infection: A Qualitative Analysis in Burkina Faso, West Africa.

Hepatitis B virus (HBV) infection is a critical global health problem. The World Health Organization (WHO) has recently developed a global elimination strategy for HBV infection. Increasing access to screening, liver assessment, and antiviral treatment are crucial steps in achieving this goal. Little is known, however, about obstacles to linkage to care in low- and middle-income countries. Using a grounded theory approach, this qualitative study sought to characterize the diagnostic itineraries of people with chronic HBV infection in Burkina Faso, a west African country with high HBV prevalence, to identify barriers to linkage from screening to specialist care with hepatic assessment (alanine transaminase and hepatitis B e antigen or HBV DNA). We conducted 80 semistructured interviews with chronically infected people, their families, medical personnel, and traditional practitioners, and participant observation of HBV diagnostic announcements and consultations. Of 30 individuals diagnosed with chronic viral hepatitis, 18 inadvertently discovered their status through blood screening and 12 actively sought diagnosis for their symptoms. Only a quarter (8/30) were linked to care. Barriers included: 1) patients' ability to pay for testing and treatment; 2) a formal health system lacking trained personnel, diagnostic infrastructures, and other resources; 3) patients' familial and social networks that discouraged access to testing and HBV knowledge; 4) a well-developed demand for and provisioning of traditional medicine for hepatitis; and 5) a weak global politics around HBV. More training for medical personnel would improve linkage to care in sub-Saharan Africa. Developing effective communications between medical workers and patients should be a major priority in this elimination strategy.

Parental HIV disclosure in Burkina Faso: experiences and challenges in the era of HAART.

Increasingly parents living with HIV will have to confront the dilemmas of concealing their lifelong treatment or disclosing to their children exposed to their daily treatment practices. However, limited data are available regarding parental HIV disclosure to children in Burkina Faso. Do parents on antiretroviral therapy disclose their HIV status to their children? What drives them? How do they proceed and how do children respond? We conducted in-depth interviews with 63 parents of children aged seven and above where the parents had been in treatment for more than 3 years in two major cities of Burkina Faso. Interviews addressed parental disclosure and the children's role in their parents' treatment. The rate of parental HIV status disclosure is as high as that of non-disclosure. Factors associated with parental disclosure include female sex, parent's older age, parent's marital history and number of children. After adjustment, it appears that the only factor remaining associated with parental disclosure was the female gender of the parent. In most of the cases, children suspected, and among non-disclosers many believed their children already knew without formal disclosure. Age of the children and history of divorce or widowhood were associated with parental disclosure. Most parents believed children do not have the necessary emotional skills to understand or that they cannot keep a secret. However, parents who disclosed to their children did not experience blame nor was their secret revealed. Rather, children became treatment supporters. Challenges to parental HIV disclosure to children are neither essential nor specific since disclosure to adults is already difficult because of perceived risk of public disclosure and subsequent stigma. However, whether aware or not of their parents' HIV-positive status, children contribute positively to the care of parents living with HIV. Perceptions about children's vulnerability and will to protect them against stigma lead parents to delay disclosure and not to overwhelm them with their experience of living with HIV. Finally, without institutional counselling support, disclosure to children remains a challenge for both parents and children, which suggests a need for rethinking of current counselling practices.

Care and secrecy: being a mother of children living with HIV in Burkina Faso.

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.